COVID vaccines and neuropathy

I'm happy to see that you are actively pursuing a good diagnosis and the correct treatment.
Please be sure to let us know what you learn from the testing, and when the symptoms resolve. It has been a topic of many questions and concerns the past few months. It,is wonderful that you have doctors who are not dismissing your concerns.
Sue

Ugh ... this has happened to me. I had Pfeizer. One week after my first vaccine the neuropathy started in both legs CONSTANTLY and sometimes in my arms. I also have pain in my neck and left side of head daily. I am having a brain MRI next week and nerve testing September 1st because that's the soonest I can get in. I have ankylosing spondylitis (an autoimmune condition of the joints) so I was afraid to get the vaccine because the CDC had no guidance for that disease and how my body would respond. My rheumatologist would not advise either way. I'm so angry I'm in so much pain. I had very random neuropathy pain before the vaccine ... but it was always just very occasional and only from my hip to my knee on my right side (same side as my bad hip) . This is both legs, from my toes to my hips. Tingling. Numb. Nerve pain. I'm wondering about Guilienne Barra because of the neck pain as well. I guess that's another symptom. What are AntiMAG antibodies? I'm calling my PCP on Monday to try to get in with him to do some bloodwork to help figure this out. I regret getting this vaccine and I will never get another booster. I'm angry. I hope we all get relief soon.

Also wanted to ask ... how did you get cases started? VAERS was very confusing to me. I will search the other sites and report mine as well.

I am almost 49 and I am experiencing severe neuropathy in both of my legs from my toes to my waist, and neck pain with a daily headache on the left side of my head. I saw the PA at my neuro guy's office, who did not mention the vaccine and I wasn't making the connection in that moment. My symptoms began about a week after my first injection. That was June 24th. I'm still in daily pain and sleeping is near impossible. I have ankylosing spondylitis (an autoimmune condition). I have had very random nerve pain from my right hip (my bad hip I recently had replaced) to my knee in the past, but it was mild and so sporadic, mostly just with sleeping. Now, it is constant nerve pain and tingling and numbness in me toes/feet IN BOTH LEGS and also in my arms. It is new, something I've never felt, and unrelenting. I have zero doubt my body is reacting to the vaccine. I regret getting the vaccine and I am so angry that these things aren't being talked about! I pray this is not forever. I will never get another booster. Anyone else with an autoimmune disease develop another one after the vaccine? Have any of your doctors SAID it's from the vaccine and also reported your case to the appropriate places ... I would thing a medical doctor's report would hold more water than a patient's. But I think physicians are reluctant to label it as vaccine-related??

I reported to Moderna first. They started the initial serious adverse event file. I continued doing the VSafe check ins and I was very specific with my feedback. They ended up contacting me.

All of my doctors have said they cannot rule out the vaccine and the timing and symptoms indicate the strong probability that this is an exaggerated response to the vaccine. They blame my previous COVID infection first and foremost as the impetus for what they believe is an exaggerated immune response that caused a series of concerning health problems... none of which I had before. For the purpose of an FDA drug study, that is all that is needed to create a serious adverse event case... the inability to definitively rule out the drug as the cause. No doctor has been able to rule it out and the problems are measurable thanks to labs and various tests they’ve ordered.

I do believe my PCP when he says that he believes that this is an inflammatory response. I want to believe him when he tells me that he believes this is a temporary state and that my body will find health and homeostasis again. Many days that is hard to believe, but I am taking a regimen of OTC meds that have histamine 1 and 2 receptors and it seems to be keeping my symptoms stable. I also agree with my Neurologist’s suspicion that my ANS is involved. After reading an article in the Atlantic on the way COVID impacts breathing and the vasovagel nerve, I have started deep breathing exercises. If nothing else, it feels good. But for some, evidence is mounting that these breathing exercises help stimulate the vasovagel nerve, which positively impacts the ANS and helps it reset. That “reset” helps to heal post-COVID neuropathy and muscle weakness. So the good news is that healing can and is happening, but the downside is that the healing process tends to be very, very slow. Hang in there. Reach out to your vaccine’s safety team and start that conversation.

You will want to call the vaccine’s safety team. They will listen and take detailed notes so have your dates and list of symptoms in front of you. I do think there are doctors who are fearful / reluctant about reporting. My doctor did not hesitate to tell me that he thought I was experiencing a reaction to the vaccine. I wasn’t expecting him to say that and I was so grateful for his honesty. He was genuinely concerned that I had Guillain Barre. That is how I got connected to my amazing Neuro team.

You have just as much of a right to file a report with a pharmaceutical company as your doctor does and the information you provide helps to make the vaccine safer for others. The drug company has to take all reports seriously and cannot discriminate. My mom monitored drug trials for FDA compliance after she retired from critical care nursing... she encouraged me to call because adverse event reports are important components of drug safety and efficacy. My agent at Moderna was very gracious and thanked me for calling to file a report. He listened to my timeline and symptoms and then said based on what he was hearing he felt that this was a “serious adverse event” and he asked my permission to start the case file. I consented and he asked very detailed questions and took detailed notes. When we were done, he gave me my case # and I felt really good about the process and his eagerness to record the timeline and facts.

Thank you! I agree and feel blessed that my doctors have been such careful listeners throughout this process. My cousin is a CNP out East and my PCP took her ideas and input into consideration as well and my current treatment plan includes her suggestions as well. Collaboration is a wonderful thing.

Thank you for being strong enough to speak truth to power. I have lived with severe painful neuropathy for years and now am developing other autoimmune disorders but I cannot get a dr to see me. If I get the vaccine there is a great chance my pain will increase and I am already living minute to minute.doctors refer me to other doctors who do not even examine me and ask me why am I there to see them - they can’t help me without even examining me. I was put in a room in the ER last night in severe pain because my hands are now frozen most of the day and my fingertips have gone from having paper cut feelings all day long to razor blades. I can’t use my finger cots any more because my finger are so swollen it makes my finger bright red then purple and I have trouble getting off. My lichen planus is now in my vagina and anus and clumps of blood are now coming out of my anus. If I call my dr they transfer me to a nurse who tells me to go to ER but both times they e stuck me in a room never examined me and let me know I could get dressed and leave whenever I’m comfortable. Last night my sister watched out of the window of my room while the doctor and nurses had a gabfest for almost an hour and whenever the doc saw my sister watching she’d turn away to go back to her buddies. After an hour of seeing no one I dressed and was leaving when I passed by the doctors computer room. The doc said that oh she was just going to check on me. I said oh and as we walked away she said I couldn’t help you anyway. Every Aurora office ER and Urgent Care are the same. My body is on fire inside but I have no fever so it’s not Covid. They are so disappointed when they ring that out. My eyes have become ultra sensitive with this happening that I need to wear sunglasses and put eye drops several times an hour. My lichen planus is also oral and my entire body but they cannot offer pain relief. Don’t know why they just can’t My left ear feels like a tennis ball is shoved in it but hearing tests show normal. Outside the Aurora buildings they have signs about heroes working at the hospital but I haven’t seen any heroes or even empathetic people. Just developed rosacea deep red and it keeps traveling further down my chest but there is nothing they can do because I am very sensitive to medication. I have stopped many times writing this because my hands are locked up and painful. My PCP asked for an hour meeting in 2 weeks but they cannot tell me what it is for. They did call back to say they needed an additional half hour but again I have no idea why. Sorry to ramble and thanks for listening.

You are fortunate to have a health care system that cares.